My blogging history: 2012: diagnosed with and underwent treatment for Primary CNS lymphoma in my brain. 2012-2013: blogged on Caring Bridge. 2013: moved to Blogger. 2017: diagnosed with bladder cancer and blogged through 14 chemotherapy treatments and 37 sessions of radiation therapy, each with its own t-shirt and musical selection. 2018 to February 2020: Treated every 3 weeks with pembrolizumab for spread of bladder cancer to lymph nodes. As of June 2020, continue to be cancer free.
27 May 2013
Healing Plants
The
weather has finally taken a turn for the better here in the northeast! But let
me first go back to when it was cold and dreary.
We
stayed in New York this weekend because we are headed up to Sharon on Wednesday
for Grandparents Day at school on Thursday and Friday. The weather was awful –
cold and rainy, so we had a quiet Sabbath. We spent part of the day reading the
new book by Letty Cottin Pogrebin, which I wrote about a few days ago. We did
not get very far because nearly every paragraph resulted in some discussion.
This will undoubtedly continue to provide Sabbath reading and discussion for a
number of weeks to come.
We
then saw two movies. The first was “Stories We Tell,” about the complicated life
of an aspiring actress, the mother of the filmmaker, Sarah Polley. It took me a
while to realize that the film was going back and forth between actual film
footage and newly created scenes using an actress to portray the main
character. Because this was confusing, and because, to be honest, I found this
family to be far more annoying than sympathetic, I cannot really say I enjoyed
this film, although I am sure it will continue to win critics’ praises.
The
second movie we saw was “What Maisie Knew.” The acting was incredible, particularly
the little girl who played Maisie, Onata Aprile. This is a gut-wrenching story
of a marital breakup. Barry and I spent a fair amount of time over a lovely
dinner at Noi Due (we had to do something fun after sitting through this film)
trying to figure out which of the two parents was the more despicable. I have
to say it is a difficult call, as both were just so self-centered and
mean-spirited. You can see from the strength of my words here that it was a
well-acted but painful film to watch.
So
we agreed that the winner of our 3-entry film festival over the last few days
was Frances Ha!
Today,
with the beautiful weather, and needing a break from all the psychological drama,
we headed off to the New York Botanical Gardens. We spent most of our time in
the new exhibit, presented by Pfizer, “Wild Medicine: Healing Plants Around the
World.” The creativity of these folks simply does not cease to amaze. And I
have to say that the people who choose to spend their time there are an
amazingly friendly bunch – we had a couple of enthusiastic discussions with
some of the other visitors. I know many of you who have been following my blog
listened to me drone on and on last year about the Monet exhibit, and at the
risk of sounding like a broken record, if you missed that one, at least try to
catch this one, which will be going until September 8th. We did not
even see the entire exhibit, in particular, we are saving the children’s area
for when our grandchildren are here later in the summer. Today we did an
overview, so it will be fun to return and spend a bit more time listening to
the recordings that go along with the exhibit.
Tomorrow
is a busy day. I have a routine appointment with my internist in the morning,
and then the first session of my two courses in the afternoon. I will check in
when I can. Meanwhile, have a wonderful week – summer is finally on the way!
Love,
Rebecca
26 May 2013
23 May 2013
Enjoying the lemonade
In
a moment of whimsy, I sent the piece I posted this morning to Letty Cottin
Pogrebin (via her web page), and I just received the following e-mail message
from her:
Dear Rebecca,
What a lovely piece! Thanks so
much for posting it on your blog, for coming last night to support me and Abby,
and for your enthusiasm for my work through the years. I'm truly grateful.
Best,
Letty
Talk
about making lemonades when life gives you lemons!
Love,
Rebecca
A sad world after all
A
story that appeared in the Huffington Post a couple of weeks ago caught my
attention only recently. The story, about Walt Disney World, was written by
Lisa Belkin, who I only wish I could claim as a relative.
It’s a smaller world for some of us
than for others, apparently.
The New York Post reports that the latest “must have” for
wealthy parents, is a “disabled” guide at Disney World, so that their darling
children don’t have to wait on lines for rides. According to an exclusive by
reporter Tara Palmeri, Manhattan “one percenters” have been passing around the
name of a “black market disney guide” -- an adult who needs a motorized scooter
for mobility, and whose presence can take advantage of the rule that
“handicapped” guests can go directly to the front of the line and bring up to
five other people along.
“When
you wish upon a star, makes no difference who you are,” Jiminy Cricket sings.
Unless, of course, you are wishing to bypass the line. Then it helps to have a
lot of money. And very few scruples.
We
are planning the first of what we hope will be four trips to Disney World over
the coming years, one with each grandchild. The ten of us had all gone two
years ago, and it was great fun, but we have long wanted to take each
grandchild separately.
Two
years ago, I rented a scooter each day. Disney World offers gracious accommodations
for parties in which a member has disabilities, including allowing them to
proceed to the front of the line (or use a separate line for people with
disabilities) on most of the rides. It certainly did alleviate some of the long
wait times, but in fact there were some rides Barry and I sat out because the wait
in the wheelchair line was far longer than in the standard line but the standard line could not accommodate the scooter.
Waiting
times were not the point. The point then, which is far truer now, is that it is
simply not possible for me to do that much walking. But now, as the trip
approaches, I am feeling sick to my stomach about the idea that someone may
look at me, oxygen and all, and wonder whether I really need that scooter or am
simply using it to cut lines.
A
world in which someone is willing to “rent” a disabled person or put an able-bodied
person in a wheelchair to gain the “perks” of traveling with a person with
disabilities is a very sad world
after all.
Love,
Rebecca
Letty Cottin Pogrebin
If you are an
American child of the 1960s, particularly a female, the name Letty Cottin
Pogrebin is probably familiar to you. As I sat down to write this, I went to a
drawer in my dresser and pulled out a copy of Ms. Magazine from May of 1973 –
forty years ago! This issue featured a cover story on Motherhood written by Ms.
Cottin Pogrebin. I have kept it in my dresser drawer for all these years, and
pulled it out in February 1999 when we went to hear her speak and I was able to
ask her to sign it for me. Here we are fifteen years later and I just pulled it
out of that same drawer. She wrote “For Rebecca, Barry, Simmie, and Dina – A
Free to Be Family.”
I still remember how
she ended that piece. She was talking about the trials and tribulations of
trying to juggle a successful career with a family (a topic that to this day
never seems to grow tired). She related that one of her daughters asked if she
ever wished she had never had children in the first place. “Sometimes my life
is a little too full because I have you children,” she said, “but for me, it
would be much too empty if I didn’t.”
For those of you who
are not familiar with her, the following is excerpted from the biography on her
web site http://www.lettycottinpogrebin.com/index.htm:
Letty
Cottin Pogrebin is an author, activist, and national lecturer. A founding
editor and writer for Ms. magazine, Pogrebin is also the author of ten books,
among them two memoirs – Getting Over Getting Older, and Deborah, Golda, and
Me: Being Female and Jewish in America – the novel, Three Daughters, and the newly
published How to Be a Friend to a Friend Who's Sick.
She is also the editor of the anthology, Stories for Free Children, and was the consulting editor on Free to Be, You and Me and Free to Be...A Family, Marlo Thomas’ ground-breaking children's books, record and television specials. Besides her twenty year affiliation with Ms. Magazine, Pogrebin has published articles and op-eds in The New York Times, Washington Post, Huffington Post, Boston Globe, among other publications. She is a co-founder of the National Women’s Political Caucus; the Ms. Foundation for Women; the UJA-Federation Task Force on Women, and the International Center for Peace in the Middle East.
She is also the editor of the anthology, Stories for Free Children, and was the consulting editor on Free to Be, You and Me and Free to Be...A Family, Marlo Thomas’ ground-breaking children's books, record and television specials. Besides her twenty year affiliation with Ms. Magazine, Pogrebin has published articles and op-eds in The New York Times, Washington Post, Huffington Post, Boston Globe, among other publications. She is a co-founder of the National Women’s Political Caucus; the Ms. Foundation for Women; the UJA-Federation Task Force on Women, and the International Center for Peace in the Middle East.
Her recently
published book caught my eye. I had not been aware of her breast cancer
diagnosis a few years ago. But when I saw that she was to be speaking in
Manhattan, I was anxious to hear what she had to say. Last night, Barry and I
attended an interview with Ms. Cottin Pogrebin conducted by her daughter,
Abigail Pogrebin.
Ms. Cottin Pogrebin
was also treated at Memorial Sloan-Kettering Cancer Center, and she took
advantage of the hours spent in the various waiting rooms there to meet and
interview people for the book she realized she had to write. Her frustration at
the behavior of some of her friends and family is tempered with tremendous
understanding and compassion for the difficult issues that friends and families
of patients often confront. She is the first to admit that, prior to her own
illness, she often said and did some of the things that were not helpful or
even upsetting to her as a cancer patient.
What is fascinating
is that she and so many of the people she interviewed seemed to have similar
reactions to the usual “comforting words” that well-meaning people say all the
time. Things like “God does not give us more than we can handle,” “if you think
you have it bad, you should hear what happened to me,” and suggestions that
one’s doctors may not be the most expert can sound trite at best and downright
agonizing at worst.
This could not have
been an easy book to write, and she talked about friends calling and
apologizing when they thought they were reading about something they might have
done. But I am glad she wrote it, because it is a much less painful way for
people to learn these lessons than the one we have experienced during this past
year. Barry and I hope to spend what is predicted to be a rainy Saturday in
NY reading the book together.
Love,
Rebecca
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